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    Every year as October approaches, I feel the thrill of autumn and the dread of Pinktober.

    It’s not that I don’t value all the work that goes into raising funds for breast cancer awareness and research.  I won’t bore you with yet another rant on this topic!  Anyone who has checked into this blog periodically knows how irate Pinkwashing and retail opportunism in the name of charity makes me.

    The fact is, I always have mixed feelings during this month.  I am thrilled to be alive, and sad for my sisters who aren’t.  It is annoying and inconvenient to be constantly reminded of breast cancer when most of the time I don’t think about it too much any more.  It is not the center of my world, and that’s how we all want it.  For women who face breast cancer, for a long time we can hardly think of anything else.  For the unfortunate ones who have disease progression instead of successful first treatment, it is always top of mind.  For women who have recurrences it is top of mind.  For those of us fortunate enough to be NED, we can blessedly enjoy a day, a week, or a month without thinking about breast cancer.

    Not so during October.  My daughter put it succinctly.  “Most of the time I don’t have to remember that my mom almost died!”

    If there is anything I can accomplish during this month, it is to gently and persistently tell the true story of breast cancer, so people like my mom who are terrified for loved ones don’t hear “Breast cancer?  Don’t worry, she’ll be fine.  They cure that now.”.  That was pretty tough for her to hear while I battled a disease that statistically was more likely to kill me than not.  It makes for a lonely journey.

    I am relieved that I don’t have to deal with the clerks at my local Safeway when I opt out of the “donate to breast cancer” option as I check out my groceries.  I don’t participate because last year I asked a clerk where that money went, she had no idea.  Neither did the manager.

    I donate year round, to organizations that give money to funding research, so we can have a world where my daughter doesn’t have to be afraid.

    Last week, one of my massage therapy clients was diagnosed with breast cancer.  She is terrified, as we all are when it happens to us.  I suspect that October will be a little extra rough for her in years to come.

    I’m so glad November is around the corner!  My birthday is in a few days.  I’m so glad it is not mixed in with Pinktober!  I can still love autumn when November comes.  I’ll be 52.  Damn pleased to be 52!  When I was 45 I wasn’t sure at all that it would happen.

    As the years pass, I am embracing who I have always been, a wellness professional.  For awhile I almost felt that I couldn’t claim that anymore, because I had faced cancer.  I, who was the picture of health and good habits…how could it be?  I know so much more now.

    Now I know that no one is exempt, no matter how “right” they do everything.  I am true to my profession because I used everything I know to beat it.

    You can check out my new website here.  I will never stop caring about the women who face breast cancer, or the people who face any cancer.  I see it every week when I go to work at the hospital.  I see it in the mirror when I look at my chest.  And, I am committed more than ever to health and healing in the forms I know best.

    Happy November!

    Well, here it is. Breast Cancer Awareness Month. Fortunately I am very, very busy, rehearsing for Narnia. Yes, I am the White Witch again! Five years ago, I was rehearsing. My daughter was 7. Now she’s 13, and playing the part of Susan. My husband, who I had just met in 2007, is playing Father Christmas. Five years ago I was a lot skinnier. My husband says I was scrawny. I was sporting the Annie Lennox look.

    Breast Cancer Awareness month is hard. While I so appreciate the funds that are raised for research, I detest the sea of pink and the pink labels on things so people will buy. It’s the good and the greedy all mixed together. My daughter confessed that she hates it as well. All during the month of October, she is reminded that she could have lost her mother. Two women on my support list announced that they are stopping treatment this week. It’s hard.

    All the dancing, writing, driving, working, has made my muscles sore. I am sore on my right side, and I noticed it just below my ribcage on the right side. I began to worry about liver mets. That happens every so often. An ache or a zing of some kind, and I worry. Someone on the list had a recurrence 6 years out. I don’t like hearing those stories.

    I stretch, I take care of myself, I watch the aches and pains, but mostly right now I’m having a blast. It’s family theater. The cuteness factor is extremely high, with little woodland fairies, animals, and cruelies, who are the witch’s minions. I have the most delightful little dwarf, my personal henchman, a ten year old named Amy. The adults in the show are there to do something magical with their kids. I appreciate all of them so much!

    If you want to see some great theater (really! We have fabulous talent directing this year), go to www.bayareaetc.org and get tickets to see the “Wardrobe” cast. We perform Friday night November 2, Sunday Matinee on the 4th, and Saturday November 10.

    When I started this blog, I came to know several other survivors in the blogospere. It is painful to me this October that they are all gone, all but one. At least the ones I knew well. I know it’s not because none of us survive. I know for myself that moving away from life being about cancer and into the next chapter tempts us to forget that people need to know we’re here. Many who make it get quieter, as life resumes. I have done that many times.

    For those at the beginning, know that I am one of many. It has been over five years. I’m still here. At the moment, cackling madly, turning little children to stone, singing fantastic music, and sharing the stage with my beautiful teenage daughter.

    Now, to bed.

    The day after tomorrow I will get on board a train and go to Seattle for another advocacy training. While the pink ribbon campaign plods along (the month is getting old, after all) and the hoopla continues, women put one foot in front of the other and plod forward, in advocacy or in treatment.

    The blogosphere has been busy lately. Fallen sisters, survivors speaking out against pinkwashing, daily breast cancer facts, metastatic breast cancer awareness day. Today two amazing warrior women are telling it like it is.

    Susan Nibur is a scientist, a mom, an advocate, an activist, and a simply wonderful human being. While she struggles with metastatic cancer, she has taken the time and energy to write a post about the realities of her life with metastatic IBC. Her in-depth, honest, complete account is a labor of love. Please read her story if you want to get past the pretty pink and know what we’re really up against.

    Likewise my other friend “down under”, who today wrote a post about facing death. This woman continues her commitment to getting her university degree while coping with treatment side effects, and somehow having the presence to pursue her studies while keeping a “my funeral” file. Read her story and get a good look at real strength.

    These women, and other amazing women like them, occupy my cyberworld and lift me when I want to whine. Today I am refreshed from my backpacking trip and have immediately managed to overcommit myself. I have writing deadlines, packing, momming, and a bizillion other concerns before I leave for Seattle on Wednesday, and I could easily just spin out on adrenaline. I don’t want to do that. I want to be mindful, aware every day of how precious each one I have is. I am so, so lucky that I don’t have to live my life under the burden of toxic treatment to keep me alive. I am so fortunate to have the stamina to overcommit myself (sometimes) and get away with it.

    What I can do now is go learn some more, and put that knowledge to good use in every way I can. I also continue to write what I know for whoever needs it. I just published another article for getting through chemotherapy, this one specific to
    managing the effects of taxol
    . My IBC article has made it’s way past Associated Content into Yahoo News, and that makes me happy.

    Susan and J, your stories are where my commitment comes from.

    This last weekend, we had beautiful weather until it was time to leave. The sound of rainfall on our tents got us up and moving. We packed in a fine mist, and then as we prepared to leave we were gifted with the most beautiful rainbow. I have it on my desktop now to remind me to keep on keeping on, and believe that breast cancer can end by 2020.

    hope

    our parting gift

    Pinktober has been rolling along very quickly, and I have been finding myself very annoyed at the whole pink thing. That’s not because there isn’t anything good about it. There is some real fundraising and activism happening mixed in with the Pinkwashing. All of that stuff is just heating up the conversations, which is good. I have been writing, a lot. I wrote an article for Associated Content on Making Your Support Count, and the editors changed the title but they put it on the front page of Health, so that was good. I’ve also distracted myself with some political writing, which as my daughter would say, is hecka fun. My article on Mitt Romney stirred the pot mightily and even upset some Mormons. Not that upsetting people is my goal, but stirring the pot definitely is!

    Why is pink month so hard? Simply because I can’t escape breast cancer. It’s everywhere. Some of the pink overwhelm is really irritating, especially the pink boxes of stuff that indicate that donations are happening without any indication of how much or to whom. That stuff just makes me want to lose it. I didn’t post at Everyday Health for a couple of weeks, ostensibly due to the stomach flu making its rounds, but I really am pissed off about pink month so my last post says it all.

    We also lost four on the IBC list this week. Four. Damn. That just sucks, really. So hard for women still scrapping to stay alive to see our sisters fall.

    So, where have I been? A bit scattered, a bit annoyed, writing some stuff, hating the sight of pink, glad that I’m still here, looking forward to when pink is no longer in my face quite so much. Ready for no bad news on the IBC list. Thinking of my friend Susan at Toddler Planet who is right smack in it, and my heart screams, NOT FAIR. She’s dealing with it much better than I am.

    This evening my son and I are off to the Dardanelle, known previously here as Camp Medicine Wheel. I can’t wait. Maybe when I get back I’ll feel more settled. I still have lots of real stories of real women to post. Right now I’m a little too flummoxed about the ones we’ve lost. Look for a happier, more grounded advocate when I get back.

    Time to get packing…

    As October approaches, we will see a parade of pink ribbons, gathering momentum throughout the month. Lots of inspiring stories, donation campaigns, pink labels on the things you buy all the time.

    And lots of businesses will make lots of money, courting your business for “the cause” and donating “a percentage” to the breast cancer cause.

    I hate pink ribbons! I hate them and I wear them. When I was in chemotherapy they made me feel supported. Now I see them on cereal boxes, cat litter, you name it. Blech.

    When I was diagnosed in 2007, I was under the impression that breast cancer was a disease that had been mostly conquered. I had heard all about early detection, better treatments, etc. etc. etc.

    What? Stage III? Inflammatory Breast Cancer (survival rate: 20-40%) Really?

    Do you know what really happens when a woman is diagnosed with breast cancer?

    Regardless of what stage her disease is, she has a one in three chance of it coming back as metastatic disease.

    Breast Cancer kills, folks. It kills 150,000 people this year.

    My friend Kathleen has posted about how the media, especially women’s magazines, support our complacency with erroneous drivel disguised as facts.

    Why is this pinkwashing going on?

    Well, all the folks who make money with your purchases would like us to believe we are winning the battle against breast cancer, so we can feel like we are doing something. If we feel that we can do something (because we are good citizens of course) easily by buying this or that pinkwashed product, then everybody from toilet paper manufacturers to water providers can cash in on increased sales from which a tiny percentage they make their token donation.

    The Pink Crusade has a very dark underbelly. Those of us who have been through the hell of what real breast cancer is steel ourselves for the sweetness and light of Breast Cancer Awareness Month that is a figment of the collective imagination.

    The battle looks very much as it has for decades.

    We’ve made strides. But we have won skirmishes, not the battle.

    Too many women and men still die. Too many are now living with metastatic disease, subjecting themselves to treatments that make them sick to get some more time. Who among us wants to leave before we are ready?

    What would you do if you were running out of time and you weren’t done yet? What drugs wouldn’t you try?

    If you were sick with chemotherapy or compromising your quality of life for more time, or losing the use of your arms, back, or brain to cancer that just keeps marching on, what the hell would you be saying about the Pink drive for dollars, and the commercialism of breast cancer?

    So what can we do?

    1. Research before you buy. Don’t just buy because there’s a pink ribbon on the box. Bookmark Think Before You Pink and take action.

    2. Join Army of Women. Be a part of the search for the CURE, not more mammograms or salaries for CEO’s of nonprofits. Those are important, but the cure is the most important. I am thankful for mammograms but my cancer did not show up on a mammogram, and I am not alone (that’s not what you heard, is it?). I will be ecstatic when I know my daughter can grow up without fear.

    3. Get behind Deadline 2020.

    4. Donate directly to legitimate breast cancer charities. Fund raise if you like, but make sure that you know exactly where the proceeds are going.

    I would like to rename Breast Cancer Awareness Month to Face Reality Month. Anybody with me?

    I just added another post on this topic at Everyday Health. Let’s take back October!

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